Thanks again, Kiwi.

And yes, the expensive Rifaximin is front-line for SIBO. I'll post here after I've taken it and hopefully I'll have something positive to report.

Please do give us an update!
I think I pm'd you but I can't figure out if it went through. This inbox/ sent thing is strange.

Hi Healthgirl,

I agree with all this, as you can imagine. I've followed all your posts and your case with the terrible situation involving your children too. I can't imagine how I'd feel in that situation and so I get your frustration with the medical establishment. It must be infuriating. I'm not sure about this, but it may be that our cases are different in that with you and your children there is some serious environmental trigger, where for me it has been long in the works via continual dysbiosis because of diet. I Again, just a thought. Your situation seems to be more extreme than mine, not that mine is a walk in the park, and diet seems to be an immediate trigger for me. I don't know, perhaps diet is a big trigger for you too.

What really matters though is that in both our situation our gut is implicated. I can't recall if you've tried antibiotics, herbal or Rx, powerful probiotics, say like the ones you can purchased from Custom Probiotics, and also diet. That's the route I'm on and in a few days I'll start the Rifaximin. And I will surely post, hopefully with good news, once I've taken them. I clearly have SIBO and dysbiosis, so there's little doubt there. Once that's over, I'll give it a few weeks, and then start on a custom probiotic blend powder that I ordered from Custom Probiotics. I've never taken them, so I'm not sure what to expect.

I'd be happy to share blood tests, but I'm afraid mine are not complete and not very useful. That's part of the problem. Nothing has really been found, other than low WBC and a few other things, which all went back to normal. The only thing that has stayed low is WBC, but even that creeps up a bit over the low end of normal. And unfortunately I don't have access to the diverse tests that you do in the States. I wish I did. I may end up going to the Mayo in a few months. If I do, I'll be happy to share that complete set, if there's anything interesting. This is the problem for me, nothing shows up, or nothing that's helpful.

I hope the new GI helps you. And by the way I didn't receive a message from you.

Thank you for this, MrsD, and for the link. There is little doubt that we are living and breathing bacteria houses in all sorts of ways. I think my body is a mess, my gut in particular, and that I need to get things straight. Most of that will have to come naturally, and medications will be of minor use here and there. In 1.5 years Rifaximin is the first one that I see a use for. Then on the with low carb diet, probiotics and herbal antibiotics and antifungals. I don't doubt that candida is also an issue with me.

Thanks for the link, Janieg. This and related research focuses much more on the brain and CNS and the big named illnesses, but it's all the same in the end. Gut bacteria gone astray, dysbiosis, and so on. I find it all interesting, and think more resources need to be focused on it.

It's true that we have access to doctors who can run labs over here, but for complicated cases, we either have to give up and accept the drugs to mask/ manage the symptoms or do the research and hope to find doctors who will help. I don't think our cases are that dissimilar David. I think genetically certain people predisposed, but it all started in the gut. There is a lot of information pointing to autoimmunity stemming from the gut. My kids are functioning, going to school, ok. I feel that due to the fact that they are growing and have rapid cellular turnover, it is not impacting them as severely. At least that is my hope- that this is not progressive. It all started with stomach aches for years, pale stool, allergies, headaches... etc, then the neurological stuff. Something was thrown out of balance and causes an immune mediated disaster.


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Perhaps you're right and our cases are not that dissimilar. I agree. I'm sure there's a genetic component for me too. I'm not sure if that has kicked in, if I've reached the point of autoimmunity yet, perhaps I have. What I know so far is that my gut is definitely implicated. And when the gut is implicated, genetics and the immune system can also be part of the equation. I hope I'm not there yet, but I can't tell. I'm going to try to heal my gut and see if that helps. I hope I'm not too far gone, that it's not progressive, so the same hope as yours. I'm glad to hear the positives regarding your children. They do have youth on their side, it seems.

Please let us know how you're doing and whether you're having success "healing."

haven't been right since I tore up my insides with iron supplements when my ferritin level dropped to 8. I had horrendous neurological symptoms when my gut felt like I had burning kerosene in it, but those did subside after a few weeks. The neuropathy set in about two months later, though. No clue if it's related or not, but I've been taking a probiotic ever since and added Candida Support when Mrs. D mentioned it.

Will do.

I always associated your neuropathy with diabetes or pre-diabetes or something along these lines, but it would seem there is another contender for the cause of your SFN.

If I may ask, which probiotic do you use? I've ordered a custom blend of powder from Custom Probiotics but haven't used it yet. I'll likely give it a try in a few weeks after I try the antibiotic.

I actually don't think the cause of my neuropathy is related to glucose issues. I'm sure the glucose spikes weren't helping at all, and if any good has come from this "adventure," it's that I may have staved off an eventual diabetes diagnosis. I think my cause is hormonal, spinal or gut-related. I had issues in all three areas right before onset.

I take this probiotic:

Amazon.com: Jarrow Formulas Jarro-Dophilus EPS, Supports Intestinal Function and Health, 12 Veggie Capsules: Health & Personal Care

I had contemplated taking the uBiome test or one like it, but they seem to still be a little questionable result-wise. I haven't looked into them lately, though.